Reducing or Withdrawing from Mental Health Medication

This might seem like a bit of an odd subject for my first post of the new year but in my book, the start of the new year is a time of making changes, resolutions, or at least wanting to.

One of the biggest changes on the agenda for me this year is that I will be working my way down to being medication free.

This is a journey that I've already begun as over the last three months, with my doctor's approval, I have been reducing the medication I'm on.

It was a really big decision to begin this journey and one that I wouldn't make lightly.

If you are considering coming off a mental health related medication that you are on, I hope this post will offer some points that may be useful to think about first.

I also hope that it will also offer some useful advice about the process of reducing medication and managing withdrawal.

My Medication Story

I have written a previous blog post including some of my views regarding the use of medication to treat mental health conditions, which can be found here.

However, in short, I was put on sertraline in July 2014 following a crisis and a long, persistent, severe episode of depression.  Sertraline is an antidepressant but it is also commonly used to treat post traumatic stress disorder, OCD and other anxiety disorders as it also has a sedative effect.

As I was suffering from these other conditions as well as depression, it seemed like the most obvious medication to put me on.

At first I suffered very bad side effects but after a few weeks, my mood began to lift and it took the edge off my anxiety.  It helped me out of a very dark hole and made it easier for me to employ other coping strategies more successfully.

I was originally put on 50 mg of sertraline, which is the smallest dose, though I found it pretty strong!  In February 2015 it was increased to 75 mg as I was starting to struggle to cope with some additional stresses in my life and felt like I was building up a bit of a tolerance to the medication.

The increase did improve things a little but two weeks after the increase, for the first time in my life, I suffered a seizure.

I was told by numerous doctors that it was impossible that the increase in medication would cause a seizure so I pushed that idea out of my mind for a while.  

My seizures, however, continued and became more and more frequent. 

I became more and more desperate for a solution.

A few months later when I saw a GP about the problem, he mentioned briefly that he was surprised I was on sertraline as he had come across a couple of cases where sertraline has lowered seizure threshold and resulted in patients experiencing seizures.  

He didn't seem overly convinced but I thought it was at least worth exploring.

(Just a side note but if you take sertraline, please don't let this worry you.  I have since found out that seizures are an extremely rare side effect of taking the medication and affect only 0.2% of those who take it)

I spoke to my psychiatrist about reducing my medication and after much deliberation, I started reducing and have now worked my way down to a third of what I was on originally.  As soon as I started reducing, my seizures decreased in frequency and there hasn't been any significant change in my mental state.  In fact, a lot of people say I actually seem better on the reduced dose, or more like myself.

The process is still ongoing, I've got a review appointment next week where I should be getting the go ahead to start coming off completely.

I may slot in an update at some point when I've come off the medication completely.

Overall, I don't regret being put on the medication at all in the first place.  It was so good for me at the time and it really kick started my recovery.  

I suppose I've  proven to myself so far though that I am now in the right place to move on and am able to cope without it.

So what I've learnt from the experience...

Make sure you are considering reducing or coming off your medication for the right reasons.

If the whole seizure issue hadn't arisen, the chances are I would still be on sertraline purely for extra security.  As I was in such a bad place before taking the medication, I was absolutely terrified that I would go back to where I was and the consequences of that could have been catastrophic.  

It is a decision not to be taken lightly and certainly not on a whim.  Give yourself time to come to the right decision.  It can be all too easy to decide that you don't need to be on anything based on just one good week.

As a loose rule, I'd say if you are in any doubt about coming off the medication then don't do it!

Weigh up the pros and cons of reducing or coming off.

This was important part of my decision making process.

You have to think about what you would gain or lose by coming off the medication and weigh up the pros and cons against each other.

Sometimes it helps to think about the best and worst possible scenarios.  For me, the worst possible scenario was that I'd come off the medication, my seizures would continue and my mood would completely crash again.  Luckily that didn't happen but it could have so it was important I considered it as a possibility.  I reminded myself though that if that did happen, I could be put on another medication and I would have other support around me.

There is always going to be some risk involved but I suppose you've just got to decide whether there are enough reasons to make it a risk worth taking.

Whatever you do, don't just suddenly stop taking the medication! 

I can't stress this point enough.

I know a lot of people can end up doing this and I can understand how it can be tempting. When I found out that my medication might be causing my seizures, I can't say I felt very enthusiastic about carrying on taking something that might have been making me ill.

Nonetheless, it is so important for your health and your safety not to suddenly stop taking the medication.  It can make you very unwell and also makes it more likely that you will experience a relapse in your mental health condition.

Seek professional advice.

This kind of follows on from my last point.

It is sensible to talk through your options with a medical professional.

In my case, I was prescribed my medication by a psychiatrist and so I had to have an appointment with them to discuss coming off the medication.

Medical professionals will be able assess factors such as the risks involved if you were to come off your medication - in my case, I had been a significant risk to myself in the past.

In the end, my psychiatrist and other professionals who are involved in my care felt that the situation regarding my mental health had improved significantly enough to warrant taking the risk of reducing my medication.  I have regular reviews to check how I am coping with each reduction and if my mental health started to deteriorate then I could be put on something else but so far so good!

It might be that after talking things through with someone who is knowledgeable about medication, you might decide that it would be best for you to switch over to another medication.

Whatever you decide, I always think that having spoken to someone professional can make you feel more confident in your decision.

Make sure it is the right time.

Timing can count for a lot sometimes.

You might want to think about whether it is the right time for you to make a significant change to your treatment.

For example, if you were at a particularly stressful or transition point in your life, such as moving house or starting a new job, it might not be the best time to have to cope with the side effects of reducing on top of everything else.

You therefore may want to time your plan to reduce around other things that are happening in your life.

I always try to time the biggest changes to my medication for when I am on holidays from work so that if I do experience side effects, they will not be affecting me when I'm working.

Make sure you have other support in place.

My psychologist was telling me that generally in recovery, mental health services would not advise stopping both medication and therapy at the same time and I can see that there is good reason for this.

It's important in any case that when you are making a big change in your life, you have support to fall back on and I suppose reducing medication and therapy are no different.

You might feel as though you have completely recovered and don't need medication or therapy anymore and this may indeed be the case but nonetheless it is important to still have some support in place just in case things do not work out as you hope they will.

When you reduce or come off your medication, it is likely that you are going to be on the look out for any sign at all that you are deteriorating or getting worse.  This has certainly been the case for me.

That's why it can be really helpful to have someone there to talk about any concerns that may crop up and if anything, they may be able to put your mind at ease.

Make sure others are aware that you are reducing or coming off your medication so that they can help to monitor you.

This also fits into the idea of having support in place.

It can really help if other people, especially people who are close to you, are aware of the changes you are making to your medication.

It will mean that they will be able to monitor how you are coping with the changes.  This can be particularly helpful if you are not always so good at telling whether your mental health is deteriorating.  

Make sure that the person/people who you tell about the upcoming changes to your medication are people you trust and who you are likely to listen to if they had concerns.

Having an extra pair of eyes and ears looking out for you might mean that you can catch it early if things start to take a turn for the worse.

Personally, I am generally quite self aware but I still find it reassuring that others are looking out for any changes in me.

Reduce slowly...

This is also a really important one.

Reducing the medication gradually over time will limit the side effects you experience and allow your body to adjust to having less in your system.

Your GP or psychiatrist may give you a plan of how much to reduce by and when.  Mine gave me targets to reduce by a certain amount over a certain number of the months but he was not so helpful on offering advice on how I should make the reduction.

The mental health charity Mind have a guide on Planning withdrawal that I found really useful.

The process of coming off a medication can take a lot longer than I think a lot of people would expect.  If you have been on the medication for a number of years, it can take just as many years to come off it.  I had been on my medication for roughly 18 months and was told that it would probably take a few months to come off it.  I suppose it does make sense though as if it takes your body that amount of time to get used to being on it, it's going to take the same amount of time to get used to coming off it.  

If anything's worth doing then it's worth doing properly.

One of the suggestions in the guide from Mind is that 

you should only reduce your dose by 10 percent at a time.  

If you cope with the reduction well, after a few days you can reduce it by another 10 percent.

If you don't feel ready to make a further reduction, you should stay on your current dose until you feel more comfortable.  As much as you may try to limit it by reducing slowly, you may still get side effects.  I suffered really bad side effects when I first went on sertraline so I was expecting the worst!  The side effects you experience are likely to be the same as any ones you had when you first started taking the medication, some common ones include: dizziness, nausea, headaches, sleep disturbance and anxiety.  It sometimes helpful just to know what to expect.  If the side effects feel manageable then you may decide to stick it out and stay on your current dose until they pass.  Generally all side effects should disappear after 2 weeks on that dose.  If the side effects feel unmanageable and are significantly reducing your ability to function, then you should go back to the amount of your last dose before the reduction and stay on that dose until you feel more comfortable.

Reducing your medication can be a bit of a technical process!  

It can involve splitting tablets into very specific amounts, which isn't always easy to do accurately.  The smallest sertraline tablets you can get are 50 mg so I've had to do a lot of chopping up tablets to make half and quarter doses.  In other medications you can get smaller tablets or get them in liquid form, making it easier to prepare accurate doses.  It is therefore worth exploring with your doctor whether you could get your medication in a different form when you are reducing.

You can buy special tablet cutters which you can get from most drugstores.  I find these useful for splitting tablets in half but I can't get a very accurate cut for anything smaller than that.  As far as I'm concerned, for the smaller doses, nothing works better than a good old kitchen knife and chopping board!

You should work to reduce and cut out one dose at a time.  For example, I used to have a dose at morning, midday and evening.  I reduced and cut out the one at midday first, then did the same to the evening one.  When cutting out a dose, you can use the method of taking it every other day, then every 2 days, then twice a week etc.  I tried this but personally I found the side effects were far worse when there was an inconsistent amount in my system.  I found it better to take the dose everyday but gradually reducing it to as little a dose as possible and then just simply cutting out the dose.

Be organised.

Reducing and cutting out your medication can feel a lot easier if you are well organised.

I always cut up and sort out all my medication for the week, putting the doses into a 7 day dosette box.

As you will not be taking a consistent amount of medication across a month, it is important that you keep track of when you will need to order your next prescription so that you get it before you run out.  When you are splitting tablets it is best to be prescribed slightly more than you need as the tablets don't always split evenly and you lose bits.

It can be helpful when you are reducing to have some extra back up medication in case you have to reduce more slowly than you planned or you may have to return to your original dose.

If you let the professional who prescribes your medication your plans regarding reducing the dose, then they should prescribe you an amount that accounts for having some extra if needs be.

I find that if you are organised, then reducing medication is not a stressful process at all and it means you have more time to spend doing more exciting things!

Keep a diary.

I was advised to keep a weekly diary tracking how much I was reducing my dose by and recording any side effects or changes to my mood or anxiety levels at each reduction.  I also had to record when I had seizures so that we could see whether they were reducing in frequency.

This can be really helpful when it comes to having your medication reviewed, rather than having to dredge through your memory and recall each unpleasant side effect!

Keep as normal a routine as possible.

It is important not to focus all your thoughts and attention on reducing your medication.  For one thing, that would be incredibly boring!  You should be mindful of how you are coping with the changes to your medication but not to the detriment of everything else going on in your life.

It is in the interest of your recovery and in making your reduction successful to have routine in your life and to do things that you value and get enjoyment out of.

You may have to take things a bit easier for a short while if you are experiencing side effects but there should still be plenty of time for fun!

I hope this blog post has offered you some useful advice if you are embarking on the exciting journey of working towards coming off your medication or that you've just found it interesting.

Love and Strength,

The One Day Seeker